aiming for grace

seeing courage through the routine.

I've been thinking about the idea of courage lately.

Recently on dLife, they featured the incredible story of eva saxl. The author James Hirsch, who has written about eva saxl, was interviewed on the show. He said something during the interview along the lines that all people taking care of their chronic illness are living with courage every day. Which isn't a new concept to me but once reminded, has stuck with me throughout the last couple of weeks.

A few days later, while having lunch with a new friend, the subject of courage came up again, this time after I mentioned that I had lived with diabetes for over 20 years. My friend got quiet and after a moment, looked me in the eyes and said "You know, you live with courage every day. Every single day." I was surprised (and touched) to say the least. And, quite frankly, left a little speechless. Courage every day. There it was again. And yes, after a moment of reflection, I thought, I know that's true about a life with chronic illness. I certainly see it in other people's journeys with diabetes. Easily. But I forget about it in my own, because I'm just doing what it takes to get through. You know, everyday stuff, because diabetes is there to be taken care of, throughout every day. Every single day.

So what occurs to me is how the routine of what we do becomes just that, routine. In the process of doing what it takes, day in and day out, the aspect of what that means, the courage, the fortitude, the grace, can so easily get lost in the shuffle. Others might see it, but it's easy for me to forget it about myself. Even as I write these words, I feel worried about sounding prideful or arrogant. And yet there it is, the universe saying yes, it takes courage to do this. Courage. Every. Single. Day.

just a moment in between.

I've been feeling pretty good about my diabetes lately. Which is to say that it hasn't weighed too heavily on my heart or mind. I've still had to deal with the inevitable highs and lows, the adjusting and all the calculations, but for some reason, it hasn't felt like such a burden. Hooray, I've been thinking.

And then today, I'm changing out my site and in a blink of an eye, I'm pulled back to that sad, hurt place I've been in so many times before. The insertion itself hurt, the insulin stung because it was too cold, the tubing got tangled in my tights and slip and undershirt and skirt, which made my still recovering frozen shoulder ache as I wrestled to get everything untangled. I had to stop, take a deep breath and start over. Basically get undressed and slowly add the layers of clothes on in a way that didn't tug on my site (a thing that always makes me feel a bit nauseated) or make it impossible to get access to the pump when I need to bolus later. It took a minute, but when it was all done, I literally had to fight back the tears. My leg where the site was, was aching. My shoulder was also aching. And my heart was aching too. It took a moment to collect myself. It was amazing. Weeks of zooming along with no problems, with feeling like everything was fine and then, boom, in one minute, I'm near tears. Amazing. Strange. So very "this disease" for me.

I guess in the end, these moments are inevitable. I guess the goal is to have more time in between them. I guess that's really what success looks like, at the end of the day. More happiness and well being, without the expectation of perfection or the inevitable disappointment when it isn't achieved. I know that's the case. But on those moments when I'm so sharply brought back to the pain and frustration and sadness of having to deal with this disease, I sometimes forget that.

you say tomato, I say toma(h)to.

I had the recent good fortune of doing a personality profile test as a team building exercise at work. I have to admit that I love these kind of things. I'm sure it's not a perfect science or anything, but who isn't at least a little interested in finding out some more about themselves? And I'm sorry, these things can be eerily accurate, like someone's been listening in on your thoughts, and taking damn good notes in the process. Cue the Twilight Zone music. Really. It was weird and fun and very revealing.

The purpose of this exercise is to help us understand the places we naturally go to in terms of interaction, communication, dealing with stress, problem solving and expression, among other things. And more importantly, it's designed to help us understand that others have their own natural places that they go to, and as such, there might be a different way to deal with different people in the same situation. One person's way of coping isn't necessarily their co-worker's way of coping. Not a big surprise, but when looked at as a group, it's a very enlightening, helpful and at the end of the day, great team building exercise. At least I found it so.

Now this isn't about personality tests per se, but rather the idea about how a given personality can deal with the same experience differently. Or more importantly, one personality might deal with certain parts of that same experience really well, while another personality, not so much. Like with diabetes. Take for example, the need to document blood sugar results. I'm most certainly not an engineering type so the tedious details, the charting, the minutea of this disease absolutely drives me up the wall. I feel burdened and boxed in by it. I hate it the most of all the parts of dealing with this disease, hands down. But someone else who's personality is suited for that kind of thing, might find solice or a feeling of power in doing the tracking and watching the details. They might actually like it. Which raises a important question for me about personality + diabetes. How does one personality type deal with the same disease state vs. another? Do our doctor's even think about this when they roll out the "how to do diabetes" tutorial, hand us those carb counting charts and send us on our way? It feels like there's basically one protocol for approaching the management of this disease and it seems like it's pretty much one size fits all to me. Obviously there is stuff that has to be done to manage this disease, but that doesn't mean that the protocol couldn't be designed in a way that frames it more organically and in sync with different personality types. No charts and graphs for my type, but maybe more of a goal oriented, milestone strategy for me. For someone more meticulous, it's a formating and pattern recognition exercise. Same goal (testing and overall better control), different framing and systems to get there. A protocol approach that aligns with a person's"natural" tendencies or personal style. Wouldn't that be amazing?

Now, I'm not talking about doing this just because it'd be nice. I'm talking about this approach to diabetes management protocol because it sets each individual up for better success. Tailoring the individual approach to diabetes to insure a higher likelihood for initial compliance and long term health. That seems smart to me. I'm struck with the fact that so much of figuring this stuff out is up to us, which is random at best. It's hard to develop a good strategy from inside your own experience and head. I happen to work at a place that realizes the need and merits of insight into personality because it translates into higher productivity and effectiveness of a team. And they don't expect us to sit around figuring it out for ourselves on top of doing our jobs. This idea makes even more sense to me when we're talking about our health. Higher productivity (compliance) and more effectiveness (better control) means better results overall. Better diabetes results. That's the goal, right?

So I'm sitting here imagining that a newly diagnosed person might go to their doctor one day, to get their blood tests, their A1C, their new diet plan and a personality test. "OK, so you're this type of a person, madam, so here's how to approach your diabetes care", framed up in a way that makes the most sense to her. Imagine how cool that would be. Imagine what a difference that could make. Imagine.

A little bit more visibility.

Visibility is an important thing. It highlights similarities and differences. It introduces us to diverse cultural experiences within our society and it reflects our own cultural experiences back out to the larger society. It's through visibility that we see the small stories of people's lives and the big stories that come from the patterns revealed through the small ones. Visibility can also shine the light on struggle, suffering and injustice. It can reveal what has been invisible before. Yes, visibility if very important indeed.

I remember when I was studying the history of civil rights in this country and the discussion around of the absence of people of color in media. The argument went that if people of color weren't shown and they didn't see themselves in mass media, television, film, as actors or broadcasters or commentators, they and their experiences were in a very real sense, invisible to society. I agree with this idea. Being a part of media, the collective experience of information and entertainment, heck, just seeing a person who looks like you or is dealing with what you're dealing with, out there, in the world that everyone else can see and be exposed to, is so important to feeling and being a part of a larger society and culture. It means that you are not invisible. It means that you are included in the big "we". It means that you aren't marginalized or diminished or forgotten. It means that you belong.

Before I started writing this blog, I felt all of those things. Invisible, outside, less than. I literally had no one who I knew or saw, who was experiencing anything like I was with diabetes. And then I was introduced to the world of blogging and suddenly, I wasn't so alone and I wasn't so invisible. There was this amazing period of revelation, of seeing myself and my experience with diabetes, in others. Out there. Beyond myself, mirroring my reality and in the process, validating it in ways I'd never experienced before. I slowly became more present and whole because of the people I saw outside myself and more importantly, because of the support and recognition they showed me. It was transformational. It was profound.

Recently I've had another experience around the idea of visibility and confirmation. The other day, I stumbled across DLife on CNBC as I was setting up my new DVR system. Diabetes on mainstream TV. Validation on a national level. Visibility to the larger culture. Hm. I'd heard about the show before but I'd never really pursued finding out about it until then. I decided to record one episode to check it out, because I'm a total snob when it comes to stuff I'll watch and if it isn't well designed and produced, I'm just not going to watch it, even it is about diabetes. Well, suffice it to say that I am hooked. The show is so well put together, informative and interesting. It's all that and then some. A great example of how they're approaching diabetes media differently, was a recent shows fresh approach the subject of nutrition. To my surprise, here was a discussion about nutrition through the filter of organic food and eating locally as a way to get more healthful attributes in your diet. By bringing a fresh and informative take on a normally tired and lecture filled subject, the important points were reiterated with new helpful ideas being added to the discussion at the same time. It was just fabulous!

What I really like about this show, is that I'm respected enough as a viewer to have well designed, intelligent, insightful content created for me as a whole person who happens to have diabetes. I'm seen as an smart audience member, a client to be served, an adult to be considered. Not a patient. Not a child. And most importantly not an invisible entity. What this show has done for me, is reflected my reality back to me on a new and larger scale. It's shown me that others see that I exist and it's broadcast my existence as a person with diabetes to the larger culture. It's given my diabetes experience the respect and honor of creating content for me that is helpful, insightful and authentic. What an amazing validation. What a difference that has made. So huge thanks to DLife and all their staff, for putting together such a great show for us all to experience and for removing yet another important layer that obscures visibility of this disease.

And speaking of a bit more visibility, I have to also thank typepad for featuring aiming for grace as their year end blog link. Their kind words and willingness to highlight one journey with diabetes, helps provide a little bit more visibility around diabetes in general. I am very grateful to them for that.

And another thank you to the dynamist for their kind link to design matters category on aiming for grace this last Monday. Sometimes I think that my rantings about medical design are like screaming into the wind. It's so wonderful to know that there are people who notice and care about the ideas we keep talking about. It's more wonderful still, when they help highlight it for the rest of the world to see. A heartfelt thank you for that!

So here's to a little bit more visibility around diabetes in 2008. Because, yes, visibility is a very important thing.